When autism ages out of the school system

California’s day programs for adults with autism are underfunded and overcrowded. But with thousands of young people with developmental delays or disabilities about to reach the age at which they can no longer attend a public school, the problem is soon going to get much, much worse.

My daughter’s story is just one example of the limited options available for these young adults and the parents who care for them.

Pam Raymond

When Briana’s special education school abruptly closed in the fall, I was faced with the premature task of finding her a placement in an adult day program. Because she is just turning twenty-one, she would only have one more year of special education services under the IDEA act of 1990, which assures a free and appropriate public education to disabled students to age twenty-two. I had not heard great things about the options out there, primarily because my daughter has a severe form of autism that requires a high staff-to-student ratio just to keep her safe and on task.

Several months prior to this I had gotten a small head start by touring a residential and adult day program, in a bucolic setting among redwoods, hills and the quaint downtown streets of Marin County. The feeling I got upon walking through the door was happiness and inclusion. A music session was winding down and most participants were engaged. Several art classes were also going on concurrently, and that was just the beginning. A textile art center was abuzz with about 30 individuals busy at their looms, while another group was outdoors doing grounds work on the nearby garden. There was a residential hall and six group homes scattered about in neighboring towns where most of the clients reside. OK, I thought, this is a program I could see my Briana in. How do I sign her up?

Not so easy. There is not even a “waiting list” per se, and they really want to have clients that are more independent. Briana still needs help sometimes in the bathroom, and she needs a pair of eyeballs on her at all times due to her eloping and wandering tendencies. There really was no space for someone with such great needs.

So what else was out there? I began the search again, this time out of urgency due to Briana’s impending loss of school placement. Our social worker at the regional center, a state-funded agency that serves people with disabilities, loosely explained the structure of existing programs. There are behavioral programs in which staff members are trained to deal with severe behaviors, such as wandering, self-injury, aggression, and toileting needs. The staff-to-client ratios in these behavioral programs start at 1:3 – one staff person for every three clients — and if need be can be moved up to 1:2 and even 1:1. In other words clients first have to try the 1:3 and fail, 1:2 and fail to get a 1:1. Instead of just asking for the 1:1 to begin with. The program I saw in Marin was non-behavioral, so the ratio is more like 1:6.

My daughter’s social worker set up more tours and I dutifully went to each one. The first one, another non-behavioral program, was quite the opposite of the Marin program. I saw 50-plus clients crowded into two run-down rooms, many in wheelchairs parked in front of a big-screen television. It was noisy and chaotic. There were some smiles, but I didn’t picture Briana there at all.

I asked the director how often the participants/clients got to go out in the community, and he said once a week, and with special arrangements by parents if you wanted activities like swimming. I couldn’t wait to get out of there, but the following two programs, which were behavioral, were not much better. They had greater staff-to-client ratio, but the clients almost never leave the building. One had a few “time out” rooms, what they described as one-to-one situations, and there was no outdoor space to utilize or enjoy.

Briana is outdoorsy, energetic, enthusiastic and for the most part happy. She has her down days just like all of us, but I want her to access the most the community has to offer. I was overwhelmed by a sense of sadness that felt like an open wound for weeks, even months later.

These programs, with some exceptions like the well-established one in Marin, are buckling under current conditions, and they are only going to get worse with the increasing number of adults like my daughter about to age out of the school setting.

The demand is leading some new programs to open up, but they are faced with trying to operate a business without failing. This usually means sub-optimal buildings leased out, or no building at all, and paying low wages to their staff.

The ratios of staff members to clients are controlled by reimbursement rates by the regional centers. The regional centers receive funding from the state Department of Developmental Services. The pay rates of some of these professionals are on par with what caregivers are paid, which is close to minimum wage. We pay the baristas that serve us our coffee or our pet-sitters more than we pay those important, compassionate people that care for our loved ones. Are we ok with this?

Time is needed to find a good day program for a disabled young adult because there are not enough options. The New York Times reports that 200,000 children with developmental delays will turn 21 or 22 in the next five years nationwide, overwhelming a system that is already inadequate for the current numbers. Legislative leaders need to know how bad the problem already is so that plans can be set forth to avoid this looming public crisis.